Standing beside the pain : Relatives' experience of living in close relationship with a loved one with long-term pain

Background In Sweden, approximately one in six people provides support or care to a loved one due to age, illness or disability. Not least to the large population group affected by long-term pain. These relatives take on a large and not too often heavy responsibility that is crucial for the care and welfare of their loved ones. Their lives together with a loved one affected by long-term pain are affected on several levels. In order to be able to support relatives in their role as informal caregivers, we must understand their situation and what they need to be able to be the support that their loved ones require. Aim The aim of this literature review was to shed light on the experiences of relatives living in close relationship to a person with long-term pain. Method A non-systematic literature review based on eleven original scientific articles, retrieved from the databases PubMed and CINAHL through the use of search terms in different combinations, as well as through manual searching. The scientific quality was ensured through a quality review based on Sophiahemmet University's assessment criteria. The results could then be compiled through an integrated data analysis. Results When compiling the material, three main themes could be discerned: Relational changes in the shadow of pain, Emotional impact and Lifestyle changes. It was clear that relatives who were based on an autonomous will in their care of the loved one felt a lower level of ill-being, compared to relatives who felt stuck in a role they had not chosen to assume. This reflects Lazarus and Folkman's (1984, p. 234) transactional stress and coping model, which states that stress arises when the individual assesses that the demands from the environment are too high in relation to their own resources in handling these demands. Conclusions This study highlighted the difficulties that relatives face in successfully balancing their own lives and identities in relation to their caring role towards their loved one. Increased support and understanding of their needs can contribute to strengthening the relationship between the relative and the loved one. This can create relatives who are able and willing to participate in care for a longer period of time and with greater commitment.